The Ocean Within – Part Three

This is part three in a series about the lymph, it deals with some of the ins and outs of lymphedema.   Click here to read Part One-Yin Magic  about the lymph as divine feminine & Part Two- Watersheds about the correlations between the Earth and our bodies.

Martin dancing in the waves on the Central Oregon Coast 2013
Martin dancing in the waves on the Central Oregon Coast 2013

Part Three – Eating Rats

The lymph system is the ocean within- moved by micro movements of every tiny muscle, and moved too by our deep breaths. Like waves on the sea the lymph system is at its best when always on the move.  Consider Magellan and his men trapped in becalmed seas, reduced to eating rats and shoe leather – a stagnant lymphatic system leads to lamentable ends.

One such lamentable end is lymphedema, and mastectomy puts you at lifelong risk for developing it. This painful and emotionally fraught disorder of the lymph system can occur even years after surgery. My fretting about lymphedema has been one of the most difficult aspects of my journey. I may have been channeling all my general cancering angst towards the loss of my lymph nodes- or it may be exactly what contains the most loss for me. My hampered lymphatic system has necessitated a change in employment, and put a damper on many activities I passionately enjoyed before, such as gardening and beekeeping. Not to mention hot baths and sauna.

A lymphatic watershed that has been shutdown by the landslide of surgery or the fire of radiation is easily overwhelmed, and is no longer able to handle the flow of lymph liquid. While many folks might spend their entire lives without ever even considering it, those with compromised lymph system don’t have that luxury. Once the flow has been disrupted, we have entered a new world. Where we can no longer count on our lymph system functioning in the background, with no thought or effort on our part. This reality requires effort to change thinking and behaviors and take the lymph system into daily consideration.

Prior to my breast cancering diagnosis I had never heard of lymphedema.  Most people I end up in conversation with about it haven’t either. My compression sleeve garners a lot of comments, and I have stopped trying to explain why I wear it, or engage in conversations with strangers about it.  It is helping me to learn skills on how to better guard my privacy- something that I haven’t historically been much good at. I have become much better at deflecting the curiosity without feeling super awkward.

But just because you haven’t heard about it does not lessen its reality.

The list of post mastectomy lymphedema risk factors include; lifting anything heavy, especially repetitive lifting, small cuts or insect bites, repetitive motion of any kind, getting burned in any way… having your blood pressure taken, or getting an IV on the effected arm, just to name the most common. And all are to be avoided for the rest of your life.  For some women with bilateral mastectomy this might mean using a leg instead of an arm to check blood pressure. Life with lymphedema can become a daily struggle to control the swelling. Folks with it may face frequent antibiotic treatments, loss of limb function, and chronic pain – which is often not addressed by pain medications. Those with severe swelling may feel disfigured. I have been luckier than most, and so far for me it has been more frustrating than debilitating.

Because it can be triggered by normal everyday activities, the new reality requires getting good at tuning in to the body’s alert system. The signs may be very subtle at first, but the situation can change quickly to something much worse if ignored. First comes an intuition, a sense that something isn’t quite right, odd sensations in the body, a certain tightness, or an ache, even grumpiness or fragile emotions can be a symptom for a backed up lymphatic system.

Last comes the swelling. Though it may be the first symptom that is acknowledged. In fact unless they have training in lymphedema, grotesque swelling, or pitting may be the only symptoms your doctor recognizes.  Swelling is usually not the first signal sent by the body. But it is the first symptom visible in a clinical setting. Pitting is when you press on a swollen area and the dimple stays. For me it was persistent “sleep” marks – like two hours after I woke up you could still see the blanket wrinkle on my arm.

The lymphatic system is the primary force of our immune system- if your lymphatic system is compromised in a part of your body – your immune system in that part is compromised as well. Your lymph system transports any pathogens from the cells back to the lymph nodes, where special cells called lymphocytes neutralize the threat. If the flow is hampered, or your nodes removed, this function is compromised.

This is why those of us with a disrupted lymph system must be vigilant and support our compromised lymphatic watersheds.  Hence my compression sleeves that I started wearing immediately post surgery per the surgeon’s recommendation, and the need for a garden glove on my right hand. To protect and give extra care to the skin in the effected part of the body also becomes important, as even small cuts can become infected.

Lymph system
Lymph system

The lymph system acts not only as a primary force in the immune system, it also provides the service byways for the body’s sanitation department.  A backed up lymph watershed means that all those cells are cut off from garbage service. Which is why infection can be next.  Much like garbage stacked on the streets of New York during a sanitation worker strike might attracts rats, the stagnant lymph fluid rich in nutrients can feed infection. Infection that the imbalanced body is no longer equipped to deal with. Cellulitis may set in, which may require intravenous antibiotics.

So the danger of disrupted lymphatic channels is that when stagnation of the protein rich lymph fluid arrises, pestilence may soon follow.  Seemingly innocuous activities might tip the balance towards build-up.  Any extra pressure to the system, say from lifting something heavy, flying in an airplane, lack of sleep, or even just a hot day.

Things that I once might have done without thought, have become “risky” behavior. Giving a small child a back ride, watering plants on my deck with a watering can, hiking Saddle Mountain in September, and going in the sauna, have each triggered a week or more of swelling and discomfort of my right arm and upper torso.  All these things increased blood flow, which in turn increased the lymph burden, which became overwhelmed and backed up. In essence becalming the inner ocean. Time to eat rats.

Hiking saddle mountain for Martin's Birthday 2015 - note my super compression sleeve.
Hiking saddle mountain for Martin’s Birthday 2015 – note my super compression sleeve.

The swelling is often very subtle- so much so that women are prone to try to ignore it. Believing that they are being too sensitive, paranoid or simply a hypochondriac. Exhibiting symptoms of the “hysterical female temperament.” The lymphedema therapist that I go to, Jan Miller, emphasized that I don’t need to be paranoid, but I do need to be aware, clue into any trouble, and take action if I ever have any sign of infection. It has taken me a while to sort out just how that is different from being paranoid, but I’m getting there.

Many doctors, even oncologists, can be pretty clueless about the realities of lymphedema.  The Radiation Doctor  whom I had such difficulty with told me he was “99% sure” that I wouldn’t ever develop lymphedema, because “I just didn’t fit the profile.” Code for “You’re not overweight.” Which is patently untrue- though excess weight does put extra pressure on the lymph system, lots of skinny folks get it- and radiation is a much bigger risk factor than extra weight.

But swelling and infection aren’t all. Another mysterious complication is known as axillary webbing, it is a hardening and tightening of lymph vessels extending down from your armpit. Sort of like varicose veins of the lymph channels. At its worse the arm and hand might contract and range of motion will become restricted. (Here is a good article about it on the excellent StepUp-SpeakOut site.)

When webbing started to develop in my right arm last summer, at first I assumed I had strained my arm somehow.  It was painful extending my arm. Then I noticed what felt like a tight tendon in my arm, in a place where there are no tendons.  I instinctively started to stretch my arm, a lot, despite the discomfort. I then visited Jan Miller, who massaged me gently and encouraged more stretching.  Luckily it resolved itself in a few weeks. Soon after I changed brands of compression sleeve to one that fits me better, and got a supportive mouse pad at work.  I haven’t had any trouble with webbing since.

Which brings me to the proactive behaviors that can support your body, to help your lymph system to do its job.  First up, avoid the stuff on the avoid list. Yes it sucks, but it is a reality you need to deal with.  I had to process a lot of anger. That anger has hindered my self-care regiment.  For example I still haven’t done the incremental weight bearing exercises that will allow me to raise my lift limit, mostly because it just pisses me off that I have to do it at all. More emotional work.

So if life has brought you rat dinner in the form of lymphedema, here are a baker’s dozen of things you can do to support your body in its effort to support you.

  1. Cut yourself some slack. Be gentle with yourself. A known side effect of lymphedema is the emotional fallout. It is possible to both be grateful for being alive post cancering diagnosis, and pissed off that your treatments will have permanent repercussions.
  2. Get regular professional lymphatic massage. Which is a method of draining lymph build up, much as overflow valves on a dam prevent the dam from breaking.
  3. Learn self massage. The lymphedema therapist can teach you to do self draining massage techniques. Which you can do daily or as needed. I have developed a habit of doing it in the shower.
  4. Get a well fitted sleeve, or for legs, stocking.  Again you can get help from your Lymphedema therapist to be measured for the right fit.  Don’t settle for a”pretty good” fit. My first two sleeves from the hospital were not tight enough on the forearm, and I think they actually caused some of my swelling. Once measured by Jan Miller I purchase my sleeves off the website LymphedemaProducts. They have excellent customer service. The ones I chose fit me better and are ten thousand times more beautiful than my first sleeves.
  5. Pay attention to your intuition. Pay attention to your body. That little voice that tells me my arm is getting tired, is really a big red STOP sign. Listen up to your little voices.
  6. Embrace your inner divine feminine. The litany of how breast cancer impacts your self image as a women is long, from baldness to boob-lessness. Having to wear a compression sleeve with your cute summer dress can be the last straw. Know that hating on your body is not conducive to healing. Allow your inner divine feminine to come shining out of what ever body you may have.
  7. Rest. This really brings up the demons for me, but your body needs to have time to do maintenance and repairs- which it only does while you are relaxed, or sleeping. So get enough sleep.
  8. Exercise. Movement helps tone your body including your lymph. Not to mention the myriad health benefits of walking, yoga, pilates, dance, QiGong…….find what works for you and make it a regular part of your life.
  9. Use your compression garment to support your arm during exercise, or repetitive actions. I wear mine to work where I am on a keyboard all day, and when I do housework.
  10. After particularly strenuous activity take time to do the self massage, and elevate your arm.
  11. Make sure your clothes are not constricting. Remember your lymph is taking the backroads now that the main highway has been taken out- for me a bra with a tight band caused trouble, as did wearing two shirts under a fitted sweater.
  12. Consider Acupuncture. A new study shows that acupuncture can assist with lymphedema. You can read a brief synopsis of the pilot study on the site NIH. It was published originally in the journal Cancer July 2013. If you are interested you can request the full study as a patient for free. Which is what I did so I could share it with my doctors, and acupuncturist.
  13. Eat good. Lots of vegetables, probiotics- anything that helps your body run smoothly will reduce pressure on your lymph system. If the foods you eat make you feel sluggish, imagine what it feels like at the cellular level.

Finally,  if you haven’t yet had surgery – ask to have your arm professionally measured prior to surgery. You might also look it up on line and get a friend to help you measure.  Our arms are often subtly different sizes due to patterns of use, so you can’t just compare your arms to each other later. This baseline measurement is very important to determining changes.

Well if you have gotten through this enormous post I salute you! Thanks for reading. and may the sparkly golden light of your lymph flow smoothly.

namaste

P.S. If you have undergone treatment for breast cancer, Consider joining this study about lymphedema put together by Stanford University. It requires periodic reporting of symptoms. They are particularly interested in patients who are not showing symptoms yet, to try to determine why some women get it and others do not. 

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2 Comments Add yours

  1. Jan Mitchell says:

    Iris-

    My thanks to you for taking on this task of writing it down. I appreciate your willingness to share what you are experiencing. All of us have friends who have gone through cancer and are continuing. This allows me to be more aware. It sounds like so much ongoing work to balance and continue on. I’m sure that you aren’t looking for admiration, but you’ve got mine.

    Today I’m sitting here nursing whatever it was that brought Roger back into Tom’s office—he passed it on finally despite my objections and protestations. Gaarumphfff………. and thanks for the bandage.

    Jan >

  2. Kathleen Sullivan says:

    Excellent Iris. Your work adds to the light of knowledge in this world. Thank you. ks

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